It is a rare family that is not asked to assume the role of caregiver at some point. If you have walked in these shoes you know how they can sometimes raise a blister or two, regardless of the love involved.
When a family member's only wish is to die peacefully at home, most of us would gladly do anything to grant that wish. Unfortunately, it's not always so simple. Exhaustion, frustration, doubt and fear can overwhelm the best of us and bring us to an emotional and physical breaking point.
The care requirements of a life limiting illness can be well beyond the ability or skill level of an average family acting on their own. In the past many terminal patients were hospitalized solely for this reason, rather than because it was a better environment for them-and certainly not because they preferred it.
Hospice is the enabler that can change that. When a person becomes a hospice patient, both they and their family are enfolded in a supportive "Circle of Care." Skilled, caring nurses, social workers, counselors and other professionals step in as a back up and support team that works closely with the patient's own physician and the hospice medical director.
A referral to hospice initiates an informational home visit where patient and family questions are answered, needs identified and options outlined. Compassionate professionals facilitate open and honest discussion that involves the patient as much as possible in the decision making process. After all, one of the hallmarks of the hospice program is honoring the patient's wishes in all things.
During their periodic in home visits hospice staff carefully monitor the patient's medical status and make sure any pain is well controlled.
All medications relating to hospice care are provided, as well as medical equipment that can make the patient more comfortable. Even a hospital bed can be brought in if needed.
The oversight, guidance and careful instruction of the hospice staff give caregivers the confidence to know that they are not alone. There is always a staff member available by phone 24 hours a day to address emergency questions or concerns.
So, when a caregiver is feeling confident that they are doing the best job possible for their loved one, there's another question to ask. Who is caring for the caregiver? Hospice sees that as a priority as well.
Both spiritual counselors and social workers are available to families, as well as patients. These trained professionals are good listeners and sounding boards for thoughts too heavy to bear alone. They are also practiced at facilitating important but difficult conversations among family members.
And finally, there are the volunteers who stop in to relieve the caregiver for a few hours. They might play a game of cards with the patient, work on a puzzle together or just chat for a while. The words are not as important as the feelings they convey. "Hi." "How are you doing?" "I was thinking about you." "You are still a part of the world and you still matter."
Families and their volunteers often become close because most volunteers have been down the same road themselves and find it easy to understand and empathize. They are good listeners too. And they know how much a few hours of respite to go shopping, get a haircut, have lunch with friends or just take a nap can revive tired bodies and sagging spirits. Like all involved in hospice care, their presence says "you are not alone."